Hey don't let "them" tell you how long you have.... You keep doing what you're doing and keep the faith. Don't ever give up....
I'm only a (very occasional) lurker, who was helped years ago by many of these lovely woman on another site.....but just wanted to tell you that during my own breast problem times, I talked to a woman called Laney here in the UK who is years out of her original diagnosis with IBC and doing great. No recurrence to date. I will try and find you a link to her UK website - her story is on it. I know things were rough for her during treatment, and she was really really scared - but she is here to tell the tale, and is campaigning for awareness with our government. Just thought an extra survivor story might be good right now...
Wishing you all the luck, stamina, and strength in the world with your journey,
ps Hi Joyce, hi MK!
I tried to paste a link to Laney's website, but couldn't get it to work! You can access it by clickin on Laney's story on the ibcsupport site (link below - and this one does work, hopefully). She hasn't updated it for a while (too busy!), but as far as I know she's six years out and very well.
The website I know of for IBC is www.ibcsupport.org and it does have many survivor stories on it.
That said, I know from experience that websites can be supportive AND scary, so I hope these are helpful and don't add to your worries...its always a risk, with the internet.
Wishing you well, xxxC
Post Edited (Clairem_uk) : 6/6/2006 10:30:29 AM (GMT-6)
Hi Wags! Welcome. Sorry that you have to be here but I can tell you that this is a wonderful group of women that will not only give you lots of support and love but also be honest!
I was diagnosed in 2001 w/ IBC along w/ a couple of other types of tumors. I also had a mastectomy followed by 4 A/C, 12 weekly taxol and 36 radiation treatments. I will never forget the first Relay For Life that I went to after I had completed all of my treatments. My surgeon came up behind me and gave me a hug. She thanked me for being there and for having the determination to beat the bc. Later she told me that the odds were agst me. (I had almost waited to long) I was rediagnosed in October, 2004 and went thru 2 yrs of weekly treatments. It wasn't easy mentally or physically. But I was determined that I wasn't going to let the cancer win. In February I was told that the cancer was totally gone.
You have to remember that bc is a managable disease now. It is NOT a death sentence. There are lots of women that are survivors and it is wonderful to read their stories. Nothing is easy about having bc. We all argee that it "sucks"! (hope I don't get in trouble for using that word) There is a group called "Y-Me". They have a 24 hr hotline. They will put you in touch w/ someone that has had the same diagnosis that you have and survived that you can talk w/ personally. I know that the gal I spoke w/ helped me.
Remember to laugh lots and keep the faith. Both are important steps in your healing. Feel free to come here to yell, scream, cry or just "hang out" and ask questions. We will help you in anyway that we can.
BTW..where are you from? Maybe we have a member that lives close to you.
Hugs...Deb from Missouri
oh my gosh ladies..........Thank you so much for all your responses!!!!! This means a lot to me
Wags, you are doing just fine w/ your responses. WTG! Yes, the nights are the worst. That is the time that it is quiet and we have too much time to think. I use to be up most of the night on the computer in a chatroom that I found. Nothing to do w/ bc but lots of peeps in the room all night!
I am glad that you didn't take your drs word and wait until the "proper time" for your mammogram. We have heard so many horror stories about drs not believing that there was something wrong and being misdiagnosed. You are NOT alone. We have to be proactive in our own care. The one thing that I learned is that drs are NOT God's and that I had/have a right to be heard. Plus if I don't think that I am getting the right care, I can change drs/oncologists, etc.
Don't worry about not starting your treatment on time. My original treatment had to be delayed over a week because I wasn't totally healed either. You may find out, during the course of your treatment, that you will need to have it stopped for a week or so because of low blood counts or neuropathy or any other number of reasons. If you have complete faith in your oncologist, then trust that he/she knows best. If you have questions, call. Talk to the nurse. They usually know more than the drs anyway. lol
Please, please remember that you can beat this. It is NOT, and I repeat...NOT...a death sentence. There are new drugs that are being used almost every day. Clinical trials are being conducted as I type this to help find a cure. Also, you don't have to be brave all of the time. You have a right to cry and scream and throw things. Be sure and talk to your onco. There are meds that can help w/ the depression. Don't be afraid to ask for them. Also, don't be afraid to let your family and close friends know how you feel. Let them know what they can do to help....bring in some meals, do some laundry, take you out of the house for a shopping trip or lunch. Remember that most people don't know what to do to help. You have to let them know.
Hello Gayle! Welcome to our little corner. No, I don't think you are nuts for posting w/out being diagnosed. We have many women that do just that. We are here to give you support as long as you need it.
It is very easy, when we are frightened, to read too much into our symptoms. Take a deep breath...sit back and try to relax. Hopefully it will be nothing. One thing that I did learn, after my first diagnosis, was that I had to be very careful which websites that I chose to read information from. Remember, anyone can make a website and post whatever they want. Sound like an expert, even if they aren't.
Why not tell us a little something about yourself? I hope that you will continue to come here and post and let all of us give you support. I know that 2 weeks seems forever. Try and stay busy. Laugh lots.